It's an illness that Megan Nelis describes as "hell on earth", but Christchurch researchers are looking for brave volunteers to take part in the world's largest ever eating disorder genetic study which is hoped to have the potential to save lives.
The research team are looking for 3500 people who have experienced eating disorders first hand to provide DNA.
The investigation will help identify genes that influence a person's risk of developing anorexia, bulimia and binge eating disorders.
Eating disorders have the highest morality rates of any mental illness, and are experienced by about 1.5 to two per cent of people.
Ms Nelis spend her teenage years battling anorexia, but is now a dedicated "heath navigator", working with people to help them overcome medical and mental challenges.
But while she admits she is still recovering and probably always will be, Ms Nelis told TVNZ1's Breakfast this morning anorexia is not who she is.
She described her struggles with the illness as "hell on earth" and talked about her family not understanding why she wouldn't "just eat".
"We have this idea that it's a cry for attention, or it's something that we do just to lose weight but it's actually a mentally driven, compulsive, 'I cannot help myself, I'm in too deep' disorder.
"It's a nightmare and if I could stop it I would but I couldn't. It was terrifying, daunting, hell on earth to be honest, but you find a way through.
"I am a survivor and I am a recoveree and I'm so glad to be here. I want to be proud that I am here today and that I am doing something to give back to and fight against a disorder that took away so much from me," she said.
Distinguished professor Cynthia Bulik, the founder of the Eating Disorders Genetic Initiative, joined Ms Nelis on Breakfast and agreed it was a difficult disorder to overcome.
She said some genetic factors had been identified in other studies, such as the psychology, but research didn't have a handle on the biology.
"Recovery is hard because you're fighting an uphill battle against your biology but we haven't known what the biology is up until now and that's what this study is going to do," Ms Bulik said.
Participants will fill out an online questionnaire about the history of their eating disorder, and if they're eligible they will fill out another questionnaire about other factors, including mood, anxiety and any issues with substance abuse in the past. Volunteers will then complete a "spit kit" and send it back to the Christchurch team to analyse.
Volunteers can take part at www.edgi.nz .
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